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Fibromyalgia Or Celiac?
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72 posts in this topic

Bridgetin ohio'

My I ask what the supplement was that took your fibro pain away or is this forbidden on this board?

Thank's

Miche

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I was dx'd a year ago with fibro after being in pain and tummy problems since I was about 7 or 8 years old. After ALOT of dr's telling me everything was fine or it was all in my head. I finally found a rheumatologist who dx'd me with fibro. FINALLY! An answer or so I thought. She put me on Cymbalta, made everything worse, ok, switched to savella, same thing, Lyrica, Damn! No good, Then Pristiq, again no help. Finally, I just quit taking the meds. I had joined Fibro Network. They send out these little priodicals and in one I read that about 75% of fibro patients have food intolerances. That was interesting. Researched further and found the word Gluten. More research and here I am. It took from the time I was dx's last year to April of this year to get my nerve up to go gluten free. As you can see in my signature what all I have a problem with. My pain and fatigue level has always been at between an 8 or 9. That is 10 being the highest. My pain levels are down to a level between somedays ranging from 2 to a 4. That is HUGE! My fatigue levels has only dropped a couple of ponts to about a 7. So i'm still working on that but slowly but surely i'm getting there.

I have never been tested for Celiac, but since my father died of colon cancer, 2 of his brothers with stomach and lung cancer, several 1st, 2nd and 3rd cousins with everything from breast cancer to brain and kidney cancer. And a great aunt and great grandmother. This all just on my dad's side. My mother's side. My grandfather and 2 of his sisters with colon and stomach cancer, as well as several cousins. In all, last count of 26 out of 48. Dad was 1 of 11, mom was 1 of 9. So lots of relatives. I think I need to stay gluten free. No way am I gonna do a gluten challenge for a chance to see if a blood test MIGHT come back positive. I am currently working on getting the money together to get my mom and I both the tests from enterolab. Just real curious as to what they have to tell us.

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Thankyou for sharing your experiences, I have now made a promise to myself to stick to the diet, I seem to react to fructose, msg, sulfites and gluten , dairy , hence with every bad reaction and fibro flare I keep changing my diet , if I think fructose cause the flare then I eliminate that and resume wheat , the problem is that I can't seem to wrap my head around the fact that it could be all of the above , my diet would be so restrictive that I would have to cook seperate meals for my husband and shopping and cooking while in a fibro flare is difficult as it is , so I make the meal to please him and suffer the consequences , I know it's crazy, last night we had guests and I served lasagna , , the garlic in it alone gave me such pain in my left scapula and stomach I could hardly breathe , was it the sulfite in the tomato sauce, the gluten in the pasta , the ricotta and mozarella or all of the above , because so many people feel that fibromyalgia is a made up disease I hate to draw attention to myself by stating that I cannot eat anything that I suspect and I stress only SUSPECT is contributing to the pain, I suppose I cannot expect anyone to take me seriously as as don't really know what I am doing and the doctors have no clue as to what is causing my pain , except thatt I was diagnosed with fibro , the tighness in my upper back scapular area is at it's worst yet I hear gas in my upper stomach and suspect it's trapped gas in my upper back that's causing the pain , I also have heartburn and the PPI that I am on are not helping one bit , sometimes I manage to release a huge burp and it then feels like a giant bubble in my left shoulder blade is leaving my body and the pain simmers down yet I still feel the fibro tightness in that area when I try to turn my upper back sideways , all this to say that I don't know what to do at times , I had a two week flare last month after I ate date squares and pork roast with garlic, it felt like the flu without a fever , I could hardly move a muscle , stomach pain, shivers and nausea plus it made me real emotional I was in tears a lot of times and could not explain why except that I felt so sick , can anyone relate to any of this or am I crazy?

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Hi Miche, yes I can relate to that. I have hurt between the shoulder blades so bad I couldn't hardly breathe. Felt like someone was sticking a knife in me. Now, when I eat something I shouldn't my first symptom is pain between the blades.

Honey, if you keep eating everything that is making you sick you will only get worse. Take a time out and make a list of everything you CAN eat, not what you can't. Garlic is a no no for some. Nightshades is also a no no for some also. Those are potatoes, tomatoes, eggplant, all peppers, and paprika. They cause inflamation and painand for some swelling. . Black pepper gives me almost instant D, within 10 minutes.

You are gonna have to speak up for yourself because no one else will. Think of a favorite food of your husband's and make it gluten free. Sometimes you can't tell the differnce.

Hang in there and email me or pm if you would like. We are all here in the same boat.

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Hi Miche,

Sounds to me like you might benefit from trying an elimination diet. That was how I found out dairy and gluten was bothering me. I don't have fibro but do have celiac. Anyhow, you can find lots of threads on this forum about elimination diets. Basically, you start with one or 2 foods that yuo think are ok for you, and build from there. You only add a new food every 3 days or so, as reactions can be delayed in some people. The idea is to build up a list of safe foods for your unique body. If you do an elim diet, remember everything counts, vitamins, medicines, teas, coffee anything you put in your body has to be eliminated. Elim diets are a do it yourself test method for food intolerances and work very well IMHO. A food diary can also be helpful to record what you eat each day and the symptoms you have.

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TXPLOWGIRL AND gluten-free IN DC , thank you both for your advice , I have one more question , I forgot to add that my allergist has diagnosed me with corn as my biggest allergy plus eggs give me instant stomach ache , so if I add gluten , msg, sulfites , dairy , soy ( related to msg ) possibly nightshades as I react to tomatoes , glucose and gassy vegetables I am left with a very restricted diet , my question is am I a rarety ? did silent celiac cause all these sensitivities and will I eventually be able to add any of these foods once my gut has healed some ?

Every one I know eat all they want so I feel like such a hypochondriac ( wrong spelling I think ) around them , I guess I shouldn't as they all have health problems that may be caused by their diet , it felt good to eat what everyone was eating when I had company , it made me feel normal , now I realise that attitude is sick and hurting me , heck they all drink and I don't , yet I never felt bad about that so as you said only me can take care of my health , thank you for your support and kindness , it helps a lot to know other people can relate .

Miche

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Hi Miche, first of all you are not alone. There are several people here that have either a corn allergy or sensitivity. Like GFinDC mentioned try the elimination diet and see if that helps. If not try the SCD diet. There are links here for both of those. If it wasn't for the support of the people here I would have been continually glutening myself. You can do it, it will take awhile and it is overwhelming at first but keep at it. Believe me that first time you wake up and you feel better than you can ever remember is worth it. There will be setbacks but just keep plugging along. Also, if you haven't already get some literature or get your husband to read the information here. Let him know that this is for real. Also, do you know that if your husband dosen't go gluten free you will need a new collander, toaster, that is if you eat gluten free toast, and new pots and pans and cutting board for yourself in case there are scratches. No matter how much you wash them gluten can embed it self. Also, shampoo, lotions, meds, etc. Like I said overwhelming. I found out in the last few days that when I make my significant other his gluten sandwiches I have to wear gloves. If not I get D within 24 hours. How's that for being sensitive?

Anyway, have a good day and try not to be so down on yourself.

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You may or may not be able to add foods back in later Miche. Everybody is different it seems. One food that celiacs commonly have problems with at first is dairy. One dairy problem is lactose sugar intolerance due to the villi being damaged and not being able to make lactase enzyme. If that is the trouble then you might be able to eat dairy after the villi heal. If the dairy problem is due to casein intolerance (dairy protein) then no such luck.

I think people's gut are very sensitive at first and perhaps they can tolerate many foods better after healing. It seems like that happened with me anyhow. I actually discovered carrots were a problem for me after a year. I still consider the jury to be out on tomatoes for myself but tend to want to try them once every 6 months out of stubborness.

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Thank you both again, as of this morning I made a promise to myself that no matter what I will learn all I can and do all I can to get better, I am sure that my husband will be supportive , he does listen to all I say about reactions to different foods and he is not a fussy eater to begin with , like me he is puzzled at times and he does want me to get better , I realy cannot blame anyone but myself in not trusting my gut feelings ( pun ) that eliminating my triggers will help me heal!

Will let you know how it goes , in the meantime Merry Christmas to all !

Miche

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Hi All,

I was dx'd with Fibro in 2008. I literally woke up one morning and felt like I had the flu that never went away. The joint pain, fatigue and brain fog has been extremely bad this year. I have noticed a difinite connection between my tummy issues, sore throat, throbbing in my ear, and tense jaw after eating any dairy products. I try to avoid all dairy. I have thought about the possible gluten connection for along time but never tried removing it.

Last month I had skin testing done to see if I was allergic to dairy or any other foods. they tested for 50 some foods-all were negative. Needless to say I was a little disappointed because I was hoping for the smoking gun! Upon leaving the Doctor's office I stopped at Barnes & Noble and picked up a copy of Fibro Aware to waste some time. The first page I turned to was an article on Food Allergies/Intolerances and Fibro. The article stated that skin testing was a waste of time because the allergies/intolerances were not IgE mediated. So, I figured it was a God thing and that I wasn't suppose to give up based on those results.

Last week, I had my GP run the Celiac Panel blood work. I haven't seen the results yet but was told on the phone they were all negative. :( I not going to get to worked up until I see them for myself.

I have been gluten free for two days. While my legs still hurt, I did notice last night that I did not feel near as fatigued as usual and that the brain fog was better.

Can someone tell me more about EntroLab?

Oh, I have a seven year old who has 11 IgE mediated food allergies and counting. She also has an autoimmune illness, an immune deficiency disease, and something called EGID that relates to Igg mediated food allergies. I'm wondering if her remaining GI issues are not also related to Gluten since one of her allergies is to rye. I've had her tested for celiac's three times-in October she had a scope too--all have been negative.

Sam

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Bridgetin ohio'

My I ask what the supplement was that took your fibro pain away or is this forbidden on this board?

Thank's

Miche

Sorry--- slow responder! lol I have been taking 5k of vitamin D in the morning and because of possible malabsorbtion 2k at night. My levels are just now reaching normal. I still have pain if I'm pushed on or poked but it has decreased.

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I too have fibro, and hypothyroid. I just hope that now that I know it is really Gluten, I may get some of my functioning back and maybe save my daughter from this awful thing!

Does anyone know if if their fibro symptoms have gotten better significantly from the gluten-free diet? Are there any studies or research articles on it.

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Hey, I'm so glad that I'm not the only one who was diagnosed with fibromyalgia here :) My symptoms have been body pain, memory problems, and fatigue. I went on a "no carb" diet and voila, I started feeling better. On days that I would take a break and have flour, I would flare BIG TIME and get IBS problems. Now, I eat carbs, but not gluten and I feel SO MUCH BETTER!! My fibromyalgia has definately improved. I'm wondering if I ever actually had fibromyalgia and if it was always the gluten intollerance. Seriously, right now my faith in my doctors is pretty close to nill. I'm still taking my low-dose Cymbalta, but mostly because getting off of it is such a bear and it does help alot with the neuropathic pain. I look at all the health problems I've ever had and 99.9% of them are all symptoms of gluten intolerance, even dental problems and easily broken bones.

Right now, my husband is in Afghanistan. He'll be home in about a year from now. I'm thinking that he's going to be coming home to a brand-new wife :D

Just Rosy

"The errand of angels is given to women"

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Hey, I'm so glad that I'm not the only one who was diagnosed with fibromyalgia here :) My symptoms have been body pain, memory problems, and fatigue. I went on a "no carb" diet and voila, I started feeling better. On days that I would take a break and have flour, I would flare BIG TIME and get IBS problems. Now, I eat carbs, but not gluten and I feel SO MUCH BETTER!! My fibromyalgia has definately improved. I'm wondering if I ever actually had fibromyalgia and if it was always the gluten intollerance. Seriously, right now my faith in my doctors is pretty close to nill. I'm still taking my low-dose Cymbalta, but mostly because getting off of it is such a bear and it does help alot with the neuropathic pain. I look at all the health problems I've ever had and 99.9% of them are all symptoms of gluten intolerance, even dental problems and easily broken bones.

Right now, my husband is in Afghanistan. He'll be home in about a year from now. I'm thinking that he's going to be coming home to a brand-new wife :D

Just Rosy

"The errand of angels is given to women"

Welcome to the board. It is amazing how good we can feel once our problems with gluten are figured out. My family says I am like a different person and I think your husband will be very pleased with his painfree wife when he comes home. His service is greatly appretiated and you have 'the toughest job' in the military so thank you also.

If you have any questions please feel free to ask.

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Hey, I'm so glad that I'm not the only one who was diagnosed with fibromyalgia here :) My symptoms have been body pain, memory problems, and fatigue. I went on a "no carb" diet and voila, I started feeling better. On days that I would take a break and have flour, I would flare BIG TIME and get IBS problems. Now, I eat carbs, but not gluten and I feel SO MUCH BETTER!! My fibromyalgia has definately improved. I'm wondering if I ever actually had fibromyalgia and if it was always the gluten intollerance. Seriously, right now my faith in my doctors is pretty close to nill. I'm still taking my low-dose Cymbalta, but mostly because getting off of it is such a bear and it does help alot with the neuropathic pain. I look at all the health problems I've ever had and 99.9% of them are all symptoms of gluten intolerance, even dental problems and easily broken bones.

Right now, my husband is in Afghanistan. He'll be home in about a year from now. I'm thinking that he's going to be coming home to a brand-new wife :D

Just Rosy

"The errand of angels is given to women"

How awesome!!

I was diagnosed with celiac disease in February and with FMS in April. So, I have been strictly gluten-free for five months BUT feel absolutely no relief from my FMS. Zero. Am thinking I may need to begin an elimination diet (?nightshades). But in my case I truly do believe I have severe FMS because I was involved in an accident 3 1/2 years ago that resulted in 3 herniated discs and multiple other things. For me FMS explains a lot - the biggest reason is that my back is not healing. I also believe that FMS and celiac disease are strongly linked and am still hopeful that my FMS will improve the longer I have been gluten-free. Have been on mega doses of Vitamin D3, B12 sublingual, B complex, magnesium glycinate, omega 3 and Zinc. No painkillers or NSAIDs have worked. :(

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The important thing to remember is that fibromyalgia should be diagnosed using very strict criteria AND after everything else has been ruled out, including Celiac if GI symptoms are present. Unfortunately, it can be a default diagnosis when MD's are frustrated and would like to treat something. For those with fibromyalgia AND Celiac disease, it's important to practice good sleep hygeine and take part in mild to moderate exercise most days of the week as well as adhering to a gluten free diet. These will probably do more to help both conditions than anything else.

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The important thing to remember is that fibromyalgia should be diagnosed using very strict criteria AND after everything else has been ruled out, including Celiac if GI symptoms are present. Unfortunately, it can be a default diagnosis when MD's are frustrated and would like to treat something. For those with fibromyalgia AND Celiac disease, it's important to practice good sleep hygeine and take part in mild to moderate exercise most days of the week as well as adhering to a gluten free diet. These will probably do more to help both conditions than anything else.

Unfortunately my pain keeps me awake a lot at nights therefore rendering me exhausted and in even more pain the next day. I do walk 45 minutes a day and try to swim when I can and do gentle stretches. It is really tough having both FMS and celiac disease, that is for sure. So far being gluten-free has done absolutely nothing for my FMS. But then sometimes it is tricky to differentiate between FMS and pain from herniated discs and so on because disc herniations can cause all sorts of trouble.

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I am always in pain from my fibro since I was 8 or maybe a combo of fibro and gluten both. I have had a reduction of the pain at least since I cut out gluten, soy, and dairy, but it wasn't until I cut the nightshades that I finally found some relief.

My pain levels have come down from an between an 8-9 to a manageable 3-4 unless I eat something bad. The pain is still in my neck and shoulders but my neck disengaged feel like It's gonna break any moment. My fatigue is what's the most irritating. It has only reduced a little from a 8-9 to a 6-7. But the stress of driving a big truck plus 40 years of damage I guess im lucky to have this much improvement. I'm not expecting to be 100% but o would love to see more improvement in the fatigue dept. It's only been 2 1/2 years so I'm hoping in another 3 that that might happen. I've got an appt with an endocrinologist in Sept to run a bunch of tests. Everthing from Lyme to hormones. Especially since thyroid, lupus and cancer runs through the family so bad

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Man, hard to spell going down the road and the other half keeps hitting potholes while youre trying to spell words on a cell phone. Can be downright aggravating especially when ur phone wants to add its own words.

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I have been diagnosed with fibromyalgia. I had a negative Celiac test three years ago, probably because I freaked out when I heard Celiac and went gluten free before my test. I never really liked wheat, even cake, but I also didn't avoid it until 2 weeks ago. I went gluten free when I decided to do an elimination diet in case my pain was food-related and my mom, a rheumatologist, suggested just eliminating wheat for now. The most obvious improvement is that the brain fog has lifted. My pain has decreased by around 2 points so far and my fatigue is a lot better too. I'm sticking with it.

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I have been diagnosed with fibromyalgia. I had a negative Celiac test three years ago, probably because I freaked out when I heard Celiac and went gluten free before my test. I never really liked wheat, even cake, but I also didn't avoid it until 2 weeks ago. I went gluten free when I decided to do an elimination diet in case my pain was food-related and my mom, a rheumatologist, suggested just eliminating wheat for now. The most obvious improvement is that the brain fog has lifted. My pain has decreased by around 2 points so far and my fatigue is a lot better too. I'm sticking with it.

That's great, GRH, an improvement is sure worth keeping on the gluten-free diet for. Wheat, rye barley and sometimes oats and possibly corn for some people are the grains to avoid. It might be easier to just go grain free completely for a month or so to see if that helps.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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Wow this thread goes way back. My mom and i both have fibro although she has never been diagnosed officially. I also have gluten intolerance, lactoce intolerance, insomnia, migraines, and restless leg syndrome. There are some other problems, but that is what relates to this post. My experience with fibro started in college. Over the winter of my junior year, i realized that my feet were painful in the morning and i had to hop down the stairs of my apartment. Years later as a sign language interpreter, i had to give it up b/c i was in too much pain in my hands and arms. After that i started teaching at a private school. There were days when i felt so dumb. The fibro fog was so bad i could not remember how to spell simple words on the board and my sentence construction came out all wrong. Most of the students were understanding, thankfully. It got so bad that the pain was preventing me from sleeping at night. I was only getting 4 hrs out of every 36hrs. I went to my principal and told him about this. He was shocked b/c i hid it so well. I asked if it was ok if i took short naps while the kids were at electives. He was very supportive. Later that year i was laid off and lost my medical benefits. Since going Gluten-Free in 2009, i have had times of relief with the fibro and times of flair ups. Last year around time, i was doing great. I lost weight. I was walking 4 mi each day. While walking one day in feb, my fingers turned blue. That night in my sleep i woke in the worst pain in a very long time. My feet were swollen. Since then i have been tested for sjogren's and in the past lupus. No dice. The only thing that shows up is an elevated SED Rate (mildly) and in the past before i went Gluten-Free my ANA was borderline for lupus, but it has since come down. I recently was referred to a sports medicine dr who specializes in fibro. She is helping me get off some of my meds. I have had several drs who saw symptom, symptom, symptom, and kept perscribing meds rather than looking for a root cause. I hope this dr will give me a bit more insight. Right now the fibro fog gets me the worst. Ihave a very hard time processing info and remembering what i was going to do. I am very strict about my Gluten-Free diet so i tend to think there is something else going on to cause this or the years of going undiagnosed gluten intoletant could have permantly damanaged my body.

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